Not Eating

armywife · November 18, 2006

Hi, everyone. My daughter just turned 2, she was diagnosed with celiac when she was 20 mo. We first knew somthing was wrong when she stared loosing weight and throwing up every couple of days for no apparent reason, she wouldnt eat anything but bread and pasta (no wonder she was sick so much), but after putting her on the gluten-free diet she starting eating like she had never tasted food before, we were so happy...she gained 4 lbs in the first 4 months. But she is back to her old ways...i cant get her to eat anything (although not throwing up). My husband is in the army and is deployed right now, I dont know if that has something to do with it (shes a big time daddys girl). She did good the first couple of months he was gone, but not anymore. She keeps telling me that her stomach hurts, but im pretty sure im not giving her anything she shouldn't have. I try to explain to her that if she eats her tummy wont hurt, but i cant get through to her. No matter what i try i cant get her to eat. All she wants to do is drink. I wont give her the cup until she has eaten but im scared that is going to dehydrate her since she will only eat literally one bit of every meal. i dont know what to do, any suggestions? Has anyone else had a similar situation? Her attitude has gotten much worse within the last months also, there could be many factors causing this though. Daddy being gone, terrible two's....but could this have something to do with it also?

by the way what is corn gluten...can she have that since it is not wheat gluten?

jayhawkmom · November 18, 2006

I think all children go through periods where they'll eat more (or less) than other times. My son is almost 15 months old, and is going through the same thing. Although, he sure doesn't tell me if he has a tummy ache, he can't vocalize that well yet.

Since you mention corn... I'm wondering if you are keeping all forms of "bad" gluten (rye, barley, oats) away from her as well. If not, you need to be steering clear of all of those other grains. Corn is ok for Celiacs, but is a highly allergic grain, in and of itself.

I can't imagine how difficult it must be to have your husband deployed. I hope he returns home safely, soon!

2kids4me · November 18, 2006

We just recently discovered Kathryn was lactose intolerant (she's 13), she has been gluten free for 3 years and I thought for awhile she was getting glutened somewhere, nausea, stomach aches, decreased appetite. I omitted dairy for several days then gave her some milk - she was sick within hours, so then (with great advice on this board), I waited til she was well again and offered lactose free milk - tada - no sick!

Lactose intolerance is common with celiac. So is a casein allergy/intolerance - if Kathryn became ill with lactose free milk, then I would have assumed acasein problem...

one thing to try anyway.

She sould be able to have water if she wants her cup, 2 year olds - gosh - I remember that! Loved carrots and sweet potatoes... gobbled them up... then one day... no way, no way did she want to eat anything orange, she decided she didnt like orange foods. groan...

good luck and let us know how things are going. Safe travels for hubby

Sandy

Ellen · November 18, 2006

Since you mention corn... I'm wondering if you are keeping all forms of "bad" gluten (rye, barley, oats) away from her as well. If not, you need to be steering clear of all of those other grains. Corn is ok for Celiacs, but is a highly allergic grain, in and of itself.

It sounds like some type of food allergy. But it may not be related to Celiacs at all. I am personally going through getting tested for eosinophilic esophagitis (EE) in addition to Celiacs. My oldest daughter (5.5 YO) has a ton of issues...mostly sloved by putting her on a gluten free/caisen (milk protein) free diet. Her reflux is starting to act up again so we're thinking of having her tested for EE as well. My vague understanding of EE is it's acid reflux caused by an allergy...most likely food. I'll have the diagnosis for myself hopefully Monday (11/21). Then they test me for waht the aditional allergy is. Then I can get a real understanding of it first hand so I know what my daughter is going through. She's non-verbal so sh doesn't really let me know when her stomach is upset or how.

In addition to this Celiacs tend to get a ton of other allergies...mostly in the grain category. One thing that is safe for Celiacs to eat but you may want to avoid for awhile is buckwheat. It is closely related to wheat but dosen't have the same chemical structure and therefore doesn't have true gluten in it...similar to corn. This contains a substance that is similar to gluten, but is digestiable by Celiacs. You may want to just try eliminating stuff till you find out what's bugging her. My 10 year old nephew was put on the infant diet of food introduction when he was first diagnosed. They took him off everything except rice and slowly...once a month...added a new grain till he was back up to the regular Celiac diet. I hope for your sake you don't have to go through that!

November 18, 2006

I know that I had ups and downs when I first when gluten-free. I did well in the beginning and then I had gastritis and my stomach hurt when I ate anything. I figured out (much later) that I can't have nightshades and when I do they really upset my stomach to the point there everything I eat makes it hurt. When that happens all I want to do is drink. I drink a lot of kefir (like liquid yogurt), boost (not chocolate malt) and carnation instant breakfast (powdered kind only, not chocolate malt).

I would listen to her and trust that she is telling the truth. I don't know if pediasure is gluten-free, or any kids supplements but I know the ones I listed above are ok.

I realize that it can be hard to communicate with kids and hard to tell what is causing their problems but if you tried feeding her anyway and that isn't working, why not try listening to her and giving her nutritious drinks.

Maybe you can keep a food diary and see if there are things she likes and doesn't like. If she will drink the carnation in milk, then milk probably isn't bothering her.

Lots of us have discovered other allergies/intolerances after going gluten-free.

November 18, 2006

buckwheat is not closely related to wheat at all, it is part of the rhubarb family and is a berry. It is NOT a grain and is not related to wheat.

My daughter certainly went through plenty of stages of refusing to eat. We didn't get her on the gluten-free diet until she was 3 though, if she's complaining that her tummy hurts I try two things, get her to go to the bathroom or eat something. Yes it's hard to get them to eat when they equate food with tummy hurting and at that age it's difficult for them to express what foods sound good to them and what don't. Try the simple things like bananas, applesauce, rice, and maybe some gluten-free crackers or toast and see if you can't get her to eat something basic.

almostnrn · November 18, 2006

I wouldn't rule out the issue that her father is deployed. We have been through that personally and sometimes it seems for us like there is a delayed reaction before the reality sets in. Its hard with your daughters age because she may not be able to verbalize her feeling about daddy being gone. Also it is a pretty abstract idea that he is so far away...I know it was hard for mine and they were much older. I'm sure that it wears on you too. Its hard not only to be home by yourself trying to take care of things but then the worry of him being ok. I will be praying for your family and your husbands safe return.

As far as getting your daughter to eat, have you by chance tried to have small "snack" type items available all the time? gluten-free cereal in a bowl, fruit, etc. I know its a horrible habit to get into not eating at the table but I found when my kids went through those times of not eating I could sneak in a snack during a favorite show without them even realizing what was going on. Hope this helps!

key · November 18, 2006

I would try no dairy. Since she was doing so well before and her tummy hurts. Does she eat out? DOes she go to daycare?? It does sound like she could be getting gluttened somewhere. It is hard to know.

It is hard on you to have to deal without a husband. Hang in there.

Monica

Ursa Major · November 18, 2006

Armywife, I had the same problem as your daughter. A year ago in October I eliminated gluten, which stopped the chronic diarrhea within a day, and my terribly fibromyalgia pains went away within two weeks (when I eliminated all lectins, of which gluten is one). My stomach aches took about a month to completely go away.

It looked like I had found my answers. Then, three months later, all my muscle pains returned. Through an elimination diet I found out I am intolerant to salicylates, too.

Why did I appear to get well at first, and then got worse again after three months?

I believe that when the villi are too damaged to absorb nutrients, they don't absorb the good ones, or a lot of the 'bad' ones (meaning, many things we're intolerant to). At first, eliminating all the lectins was enough. But when the villi healed, and started absorbing the salicylates properly, I was in trouble again and needed to eliminate those.

It sounds like your daughter did great for a few months, but now the villi are healed enough that something else is bothering her, giving her a tummy ache.

You need to try an elimination diet to find out what the problem food(s) is. I suggest you eliminate all dairy, corn and soy for starters, to see if that helps. If she feels better, keep those foods away from her for a month, and then try them one at a time (at least a week apart to catch any delayed reactions) to see what happens. Eliminate the ones (if any) she reacts to for at least a year before trying them again. If they remain a problem after a year, eliminate them for life.

If taking those foods out of her diet won't make a difference within two weeks, try other things that are likely culprits, like eggs or nightshades (potatoes, tomatoes, peppers, eggplant) and nuts.

Hopefully it is just dairy and/or soy (the most common allergens/intolerances for people with celiac disease), otherwise you'll have to keep looking until you figure it out. Don't dismiss your daughter's complaints of a tummy ache as just psychological, especially after eating so well for four months.

kbtoyssni · November 18, 2006

Corn gluten is ok. Gluten is used to refer to the protien in a grain so you've got wheat gluten, corn gluten, rye gluten, etc. Only the gluten in WBRO is harmful to celiacs, although I agree that it's a bit unsettling when someone refers to corn gluten

armywife · November 22, 2006

Thanks everyone for your suggestions, after reading some of the other discussions on here, im thinking that I might not be all gluten out of her diet. I never thought of checking bandaids and paper towels. Just yesterday I realized that i was giving her vitamins with gluten. I feel like such a horrible mother. Did anyone else have this much trouble starting out with the diet? I really need to find a support group around here. Does anyone live in NC and know of one around Fayetteville? I found a number on this website, but when I called it the man said i had the wrong number??

ArtGirl · November 22, 2006

Did anyone else have this much trouble starting out with the diet?

Oh, yes. If it weren't for this forum I'd still be struggling. There are so many places to look for gluten, like dog food and hand lotion. And vitamins - gosh, I must have thrown away a hundred dollars in supplements and vitamins after learning that they had gluten in them (and corn - I have a corn allergy, which I didn't isolate until some time after going gluten-free).

Don't be too hard on yourself - it's takes time to learn everything and totally eliminate gluten - I'd think it is especially hard with young children who can't communicate well yet.

Ursa Major · November 22, 2006

Thanks everyone for your suggestions, after reading some of the other discussions on here, im thinking that I might not be all gluten out of her diet. I never thought of checking bandaids and paper towels. Just yesterday I realized that i was giving her vitamins with gluten. I feel like such a horrible mother. Did anyone else have this much trouble starting out with the diet? I really need to find a support group around here. Does anyone live in NC and know of one around Fayetteville? I found a number on this website, but when I called it the man said i had the wrong number??

You're not a horrible mother. If doctors would be more knowledgeable and give you better information, we wouldn't have to figure it all out on our own.

Others here will know of good brands for children's vitamins that are gluten-free.

Have you checked shampoo, conditioner, bubble bath, toothpaste, soap, lotion etc. for gluten? It will hide in all kinds of things. Also, have you bought your daughter her own toaster, only to be used for gluten-free bread? Toasters are a source of cross-contamination. As are plastic colanders. Never drain gluten-free noodles with a colander that has been used for wheat noodles, you can absolutely not get it clean enough to be safe.

It is tricky. You will figure it out in the end. I hope that maybe her vitamins are the answer. But it would be a good idea to eliminate dairy, at least for a while, anyway. Because most celiacs can't tolerate dairy for at least six months to a year when going gluten-free, because of lactose intolerance (caused by damaged villi). Many have a casein intolerance, though, and won't ever be able to have dairy products again.

I hope your daughter feels better soon.

azmom3 · November 24, 2006

ditto what almostnrn said...small snacks throughout the day as opposed to or in addition to meals. My son is 26 months and we have had to resort to this to help him put on some weight. It takes him a really, really long time to eat even a small amount and many times he takes 1 or 2 bites and says "all done." We just keep offering as often as we can and it has made a difference for us. Also, another person posted about eosinophilic esophagitis...my son is also being tested for this. It wouldn't hurt to look into it. If you haven't done allergy testing yet, it might be worth it. If your child isn't showing allergy problems at all, then I would say that eosinophilic esophagitis is probablyl not the problem, but if there are some allergies, then it might be worth looking into it. This is a fairly new problem they're seeing and it's been on the rise. Good luck!

moomama18 · November 24, 2006

I would say the same as others here as far as hidden glutens. I had the same experience with her vitamins. She now takes two to get all the vitamins and minerals she needs. I also had to switch her soap/lotion. Once I did that, it eliminated a lot of issues for us. Fortunately for me, eating has never been an issue for her - she loves to eat.

I would also say that your husband being away might have some impact but I would worry mostly about the hidden glutens. Hang in there, it gets easier with time. It may seem hard at first, but there are many battles that are worse.

I'm in MD, not NC but not so far if you have any questions or need help.

Michelle